I mow, I mow, Because the grass does grow...

I mowed the yard yesterday.
I have mentioned that I have a love hate relationship with mowing.

Yesterday Hubby had a fairly confusing day. Lewy started it off that way. After a night of constant sleep interruptions I decided to rise and hope he would decide to lay back down and sleep. I drank my morning pot of coffee. Took care of my Facebook obligations (games);-) threw the bathroom rugs in the washer and dryer and cooked Hubby some biscuits and gravy with sausage (his new obsession) tended to a few household chores, OK a very few household chores, FINE I rinsed a dish sheesh!! Give a girl a break ;-)

As I dressed and was preparing to go out and tackle the yard I told him of my yard plans and asked him if he wanted anything before I went out. He looked at me with a confused expression and said, "Now? It's time for bed."
I had to explain what time it was and show him the sun shining brightly. He shuffled over to the clock and stared at it for a bit and said "hmm" someone told me it was..." And that was the end of that conversation.

Hubby decided to lay down anyway so I took the chance to scoot out while he was still. I come in every little bit to check on Hubby and make sure he is OK and see if the phone rang while I was out. It also keeps me from being in the sun too long at one time and hydrated and snacked :)

Hubby's condition has taken a down turn. Actually, just a consistent of what already was occasionally. We are now fully dependent on incontinence aids. YAY! Not yay in a, glad we are there, way but yay in, I am glad he made the decision avoiding the many mishaps that have occurred and the extra laundry.

The delusions/hallucinations have always been there, mostly at night, but Hubby has kept them to himself most of the time because he wasn't sure if they were real or not so he chose to think they were not or waited until they were verified in some way.
But as of late, they are mentioned more these days as well as nights. Mostly in the "Somebody told me", "Who was here?", "I keep thinking a lot of people are talking to me". Somewhere Hubby still has the ability to sort them out enough to ask me now if what is perceived is the truth and accepts that it isn't possible when I tell him it did not happen. I consider it a blessing that he is never upset by those thoughts and voices or people. I might even like them myself if they would just help around the house ;-) But they don't so the work is left up to me alone. sigh

As we were laying in bed last night I was watching some television while Hubby was laying close with his arm across me. He looked up at me and asked me if I ever got my TV's hooked up.

Trying not to be confused by his question I asked what TV's was he talking about?

He said "Those ones..."
Then he looked around and said "Oh that can't be right, they told me..."

I questioned him further about they.

He said "Those people were talking to me about..."

I said there was nobody here to talk to him but me.

He looked at me and said "I have a lot of people that talk to me. Is it part of my brain problem?"

How clear and complete was that?
I told him that it must be very confusing to have so many people talking to him.

He agreed.

Then he looked at me for a long time and said
"You know, I kinda remember who you are."

I smiled and said that was a good thing.

He told me "I should have helped me mow the yard."

I asked him "Like we used to? That would be nice."

Then I thought about how we used to mow our 2 acres when he did help me. 2 riding mowers side by side and us holding hands until we had to turn then rejoined.

Life seems simple then.

Numb

I started to say Lewy bodies have me feeling numb but realized numb is no feeling at all.

SO just what am I feeling?

Here's our update.
The hearing for Hubby's guardianship went well and I was appointed. As such I will now need to file an annual accounting of expenses and health update. I have no problems doing this. What's a little extra work ;-)

Seriously, I was very pleased with the proceedings and the Judge and the Bailiff were as supportive and helpfully informative as you could imagine. As I handled the case Pro Se (by myself) The Judge took me off record to explain some of the responsibilities of guardianship. The things I was allowed to spend Hubby's income on and the things I was not allowed to spend it on. It struck me as odd but understandable, as most spouses never have to declare themselves as guardians, that I was able to spend Hubby's income on His food but not mine. ALL expenses had to be for Hubby's benefit and Hubby's alone. The Judge in his kindness did smile and say he would grant me a generous salary for the 24 hr caregiving I provide.

The bailiff informed me of a couple of things I did not know of concerning the veterans. He is a retired Military and wanted to pass on some information he felt would be beneficial to both hubby and myself.

The first was a grant for "Special Adaptive Housing"
The second was a "Veterans Mortgage Life Insurance"

We do not qualify for the Life Ins due to Hubby's age.
I will do more research on the adaptive housing.

All in all I was very pleased with the outcome of the day and VERY appreciative of all the help.

We still have a ways to go until we get back to our financial normal. Hubby's biggest income is still floating around somewhere. We have yet to receive it and that loss still keeps us in financial distress for now. Savings (big laugh, should be called squirrel money) plowed through to cover last months expenses which are now due again for this month. It's a waiting game.

Now my life sits in limbo. Can't move forward can't move back. Numb.
Maybe that's a good place to be right now.

As for Hubby. Informed that a guardianship was taking place. Properly notified, Dr discussed it with him and Hubby even agreed it would be a good thing. Nothing done behind his back. He becomes confused as to exactly what would happen. He is under the impression that I will now keep him locked up. I tried to reassure him that is NOT the case. He actually became so upset that while his sister was here he verbally lashed out at her for no reason. While I was trying once again to explain the reasons behind the guardianship, his sister injected that it was so I could pay the bills. His reaction to the comment she made took me by surprise. At one point he rose from his chair as to strike her. I was floored. He said some very hurtful things to her. Bless her heart for understanding.
I would not have been surprised if the anger and hostility had been directed at me. It has been before and I can deal with it, but his sister who he has always admired and respected had to be on the receiving end of it. So sad.
She stepped away from the situation and went home. I called to make sure she was OK and she assured me she was. God bless her. I know that had to hurt.

As Hubby slips farther and farther the things I want to protect others from are becoming increasingly difficult. For the first time while talking to our son, Hubby called him by another name. I could tell my son was hurt by the tone of his voice but I don't think he would ever admit it completely. He tries to be strong for me. I try to be strong for my family. I suppose we can't keep them completely protected.

Wow this is such a depressing post so I shall stop!
Better start looking for the positive.

Huh?

Everything I say must be repeated.
EVERYTHING I SAY MUST BE REPEATED.

Lewy has taken Hubby into the world of garbled language. He doesn't always hear what I say. I don't know if it's my tone he can't hear or if his brain can not process the words correctly. The latter is actually my guess. This has been going on for some time but is increasingly worse.

I admit I am tired of constantly repeating myself to "Huh?".

Being more aware that Hubby had this hearing difficulty I try to speak up when I'm talking. I have even tried saying his name and getting his attention on me before I speak. I don't always remember to do that but I do try. I try and remember to speak slower, something that has always been a difficult thing for me as I grew up in the North and transplanted myself to the South. Some habits are difficult to completely break.
The main thing is I still try to converse with Hubby.

Conversation is becoming increasingly difficult though. For one I have never been much of a conversationalist. I steered away from politics as Hubby, who loved politics, had enough opinion for both of us and mine wasn't necessary. That's fine. News headlines don't make there way into the home by way of TV as I have found that Hubby gets more anxious when he watches the news. When state or world news became part of his own personal reality I took the easy way out of avoiding distress by avoiding the news or any other program that evokes thoughts of insecurity or danger.

Since we are basically home bound we don't get out and see people. So our social conversations are lacking. And those we do see on the rare occasion get as confused as Hubby when he tries to converse with them. They look at me and I just shrug, smile and divert the topic.

Mail or pamphlets that Hubby tries to read frustrate him. He was looking over a piece of mail we received and told me he couldn't read it. I asked him why and he said he couldn't see it or understand it.


We don't converse about TV programs either. As time went by Hubby's ability to keep up with a show plot diminished also. It's no wonder he can't keep up with a conversation. Even a short one.

I do get tickled at some of our conversations we try to have. I also get annoyed at having to repeat everything I say. Mostly I get tickled.

For instance,

Setting: End of a tiresome day. Hubby has been awake and needy all day and I have had to repeat myself to Hubby's "Huh?" the vast majority of the day.

We have had a few chilly nights lately. Hubby complains about being cold ALL the time so this cold snap has been a little extra chilly for him. As we were calling it a night I asked Hubby if he wanted another blanket on the bed for his feet.

Hubby said "Huh?" (Seriously, again?!grr)

Louder, I say "Do you want another blanket on the bed for your feet?"

Hubby gets a confused look on his face and says, "Do I want a bucket?"

I get a annoyed look on my face and glare at him. With agitation in my voice said "NO! Now why on earth would I put a bucket on the bed?"

Hubby's answer. "I don't know, you said it."

Dumbfounded I just stared at him and fell out laughing.

And thus is how many of our conversations go :)

So much better than comedy TV!

Hate/Love Relationship

I hate mowing.
I love mowing.

I hate mowing because it's usually hot and if it isn't I know it will be.
It's dusty and dirty and a job that has to be done often and it takes a long time. I usually have to dedicate a couple of days for it.
Gas can be expensive and mowers require maintenance I am learning to give. Our inability to just get up and go pinches me when I need stuff to repair flat tires or change oil or replenish gas etc etc.
One of my big fears is that while I am taking care the yard, Hubby will be in the house and fall down. I will not hear him if he does. That fear keeps me coming back into the house every little bit to check on Hubby and continually watching the doors in case he attempts to come outside to find me. I've nearly run into a tree straining to see the back door once. Call me George ;-) LOL

I love mowing because it is a solitude away from the phone and the monitor. It is a time I pray and reflect and have some 'quiet time' enjoying the beauty of the earth around me and the sky and the sheer awesomeness of God's handiwork. It's when I mostly appreciate the trees and the shade they offer when I'm hot and need to find rest under one for a short time until I continue with my chore. The sound of the mower drowns out the passing cars and other noises. I once made a comment that I enjoy praying while I mow because I know God can hear me even over the noise of the mower, Heart sounds are louder.

So God and I mowed yesterday and I talked and listened to a great many things.

The update on our bank fiasco has good news. Our income was returned to the sending institutions and placed in suspended status. We now have them un-suspended and should receive an income again in 10 days. YAY! Did I happen to say YAY?!

Our sleeping situation has not improved but I was woke only a couple of times last night. I tried to go to bed early and catch up on a few zzz's. I feel less brain dead today.

Hubby has had a few tough physical days. We took a pleasurable opportunity to have lunch with our baby girl and her hubby. It's strange when your children fight with you over who is going to pay. I offered but conceded her insistence as I know they are aware of our situation and want nothing more than to help in any way.
Hubby was barely able to make it into the restaurant but didn't want to use the wheel chair. We asked to be seated at a closer table than they originally gave us.
Daughter and Son in law gathered up the drinks and utensils and brought them to our new table. After our meal Hubby needed to find the men's room and I was able to get him there. As he went inside I scooted out to the vehicle and retrieved the wheel chair. He did not fuss about the ride out.

He barely walks around the house the last few days due to this difficulty. I try and encourage him to use his walker but I truly believe he doesn't know how to use it properly. No matter how many times I try to explain and demonstrate he wants to "push' the walker. I fear he will topple over and tangle himself up in the walker. That would surely be a site. He uses the walker as a place to put his housecoat. At least it isn't on the floor for him to trip on.

Last night in an attempt to get to the bathroom he spilled a glass of milk and didn't make it in time. A more frequent problem. He went in to clean up and change and upon his entrance he announced there was a big bug in the bathroom.
Normally I would jump up, collect the necessary killing tools and go concur the beast but instead I asked him if he killed it. Hubby happily answered "Yes!"
To which I responded like a damsel in distress, "MY HERO". Hubby smiled and laughed and said "Yep!"

Those are the moments I want to and hope I focus on in the midst of all the confusion and tiredness. I want them to be beacons in the storms of this Lewy Life.
it hasn't been easy this past month to find the light so I am learning (not there just yet, may be a long process) to be calm and listen to the small gentle voice of God. He can show me what I'm missing and more often than not asks me if I'm finished throwing a tantrum so HE can show me.

Night time feedings, security blankets, needyness and loss of sleep

Sounds like a new parent and baby doesn't it?

Nope, it's not. It's me and Hubby :)

Hubby sleeps so much. Even though he takes a night time sleeping aide he STILL has nighttime house wandering. He can even be in a wake pattern for a couple of days in a row and have the need to completely crash yet still have the night wandering. I am blessed that he never tries to leave the house. One thing in our favor may be that we live in the country so to speak so it's pretty dark and difficult to see at night. That compounded with his poor eyesight anyway may make him feel safer in the house, even if he isn't sure if it is his house or not.

Hubby likes to eat at night also. With no sense of time he has announced to me in the middle of the night that he wants me to make him some Malt O meal.
Umm... NO.
He raids the refrigerator for anything he can find. I am happy he still likes to eat but his lack of movement and limited intake of fluids due to the excess sleeping cause him constipation problems. I can not make him understand that.

I have realized that when Hubby is awake he is very needy. From the moment he wakes until he lays back down he needs me to do this or do that. He never asks, he never has come to think of it, but tells me what he needs or wants.

I need something to eat.
I need this junk fixed (remote) so i can watch that (TV).
My feet are cold. Turn up that thing (heater)
The toilet is stopped up.
I need this blister fixed.
Hey Honey?... (complete silence and conversation never started or if it is, never finished)

Of course I jump and run and tend and do and fix and turn and find and suggest and wait.

At night when I get to sleep he will poke and prod and spat and touch me all night. Making sure I am there. Like a security blanket. And he won't stop until I acknowledge I am awake. Then he starts again when I fall asleep.

My mind and body need continuous hours of sleep. Straight, in a row hours. Not divided up in segments. This broken sleep pattern causes me to have brain fog and irritability problems. I nap during the day but it just isn't what my body needs.

I remember when our children were babies I did the same thing when they first got here. In my head I remember reading it wouldn't last long. I remember some family telling me the same thing even though it felt like forever until they grew out of it. When the next child came the same cycle of crazy sleep occurred and I remembered it wouldn't last long.

I don't have that same feeling now. I don't know how long Lewy will keep my sleep disrupted. I am tired and stagnant. That sounds pretty pitiful but truthful :-0

On a good note...
I'll have to think on that one right now and get back with you ;-)

How can I be angry at him?

Yet I find it happens so I try to change the focus of what I am angry at.

I have learned, for the most part, not to make plans for anything and NEVER promise anyone we will attend, meet, go. I have been disappointed too many times and do the best I can to avoid the emotion.

We make plans to do things. We talk about them and plan out our schedule for accomplishing them only to lay them aside in the end. The emotional effort that goes into planning a trip just to the store is pretty big around here.

Today though, I find myself once again in the throws of disappointment and yes anger. Anger I am trying not to displace.
Last night we made all the plans to follow through with a trip to our grandson's 4th Birthday Party.
I have told all of our children do NOT count on us to be able to join you in anything. I don't want them to be disappointed if I say we will and then turns out we can't.
Hubby carried on a very clear and concise conversation about it. We planned the attire and timing for the 3 hr trip and it was set that we would go. I went to sleep excited at the prospect of not only getting to see our grandchildren, and daughter, but seeing the surprise on our daughters face when we arrived. I knew we would be greeted by all sorts of hugs and kisses and maybe a few happy tears. Now all of that is dashed into the ground this morning.

But I have to keep asking myself. How can I be angry at Hubby?

If I woke up or found myself in a strange place with people I really do not remember how would I feel?
If someone told me something I was supposed to have done and I didn't remember it, how would I feel?
If a stranger I was told I was married to announced we made plans and started telling me I needed to get ready to go but I didn't remember, how would I feel?

How would I feel if every day I was lost in partially familiar territory not knowing how to find my way out and only being comforted by the few things I did remember. If I couldn't distinguish between my dreams and my reality. "Did I dream that or did it really happen?" If I thought I had conversations with people that seem real to me. If my mind told me I could do something and my body disagreed.
How would I feel?

So I MUST daily remind myself of those things for Hubby's sake.

I am however, mad as hell (sorry) about Lewy bodies.
It steals so much and the harder I try to fight it the harder it fights back.
Mocking me that it will win in the end. I just want to give it a run for the money. It just really beats me up some days.

There is only so much one person can deal with and some days I think I may be at the end of my rope.
Hubby's Home Health Contract expired and he was booted out of the system until the V.A. catches up with the authorization for renewal. This means no aide for him and no quick errands to town for necessaries. (Thank the Lord for family willing to make a milk run) Why it may take more than 2 weeks to renew is beyond me. Especially since I was on the phone with them as they put in the request. But This person has to OK it and That person has to double OK it. (rolling eyes).
Of course I have every capability to tend to Hubby's personal care and I do. I think the aide is more for me than Hubby :)

We are also on 3 weeks since the horrible bank incident.
Still no funds available for us and although I was able to scrape up enough money to get the bills paid, next month's crop of bills are coming in with no resources available to take care of them. **This is not a cry for help. This information is strictly for an update on the situation. I truly believe things will be taken care of in due time.**

Today I still have some rope left to cling to.
I don't know who reads this thing but I do know it is a pretty good therapy for me.
Just getting the words out of my head helps.

It's a beautiful Sunday. Cool and crisp.
Hubby sleeps quietly and peacefully as opposed to thrashing and talking.
Grandson will have a wonderful time with his friends, brothers and parents. They will know I am thinking of them.
I have a roof over me and food in the house.
My internet is connected (very important) ;-)
I am loved and prayed for.

In everything give thanks.

Some days my heart and soul need to sing or cry